A Bit of Nature

The weather has been so beautiful the last two weeks, so I have been taking advantage of it and doing lots of work in our yard. Here are a couple photos of the potted plants on our patio. I am excited to use some of the fresh basil I planted in some of my summer dishes! Jeff and I have also been working very hard on putting in new flowerbeds, a sprinkler system for the grass, and planting new plants in the yard...pictures of those things to come very soon!

Tub Time Fun

Shampoo mohawk...
makes me happy!

Playing with the new boat that the Darlings bought Nicholas for his birthday. Mason Darling LOVES boats and picked it out especially for Nicholas. It came with a fishing pole, 5 fish, a captain, a life-preserver, and 3 cups. Nicholas loves his new bath toy!

Thank you Nate, Erin, McKenzie & Mason!

Time to Party!

Today was Nicholas's birthday party with family and friends. Nicholas enjoyed every second of his special day. Here he is smiling at his new Grover toy.

Sporting his birthday tee.

The other kiddos at the party enjoyed playing in my parents backyard in the beautiful sunshine!

Yummy monkey cake! So good! Thanks, Barbi!

Playtime with mama. Nicholas likes to throw himself backward and giggles uncontrollably. I guess since he can't move much, this is his fix!

Thank you to everyone who came and celebrated Nicholas's big day! Nicholas LOVES all of his gifts and we loved seeing all of you! Happy birthday baby!

A ONE-derful Day!

Guess who turned one today?! Nicholas was very interested in his large brightly wrapped gifts from mom and dad.
Mommy spent the morning baking cupcakes to celebrate the big day.

After a yummy dinner, Nicholas opened his gifts. He got a teddy bear from mommy's co-worker, Diane...

A car and lots of cute clothes from Gramme and Grandpa...

A water floaty for summer and a...

fun new table with a computer, a phone, a piano, and a book from mommy and daddy.

After all the present opening fun, Nicholas got into his birthday suit + diaper (how appropriate!) and we sang "Happy Birthday" to him. Gramme taught Nicholas how to blow out his candle yesterday, but he must have forgot, so mommy had to help him because he just wanted to touch the pretty flame!
Then he had his first taste of cupcake and kept looking at mommy to see if the mess he was making was okay.
What a yummy cupcake!

Happy First Birthday, buddy! Mommy and daddy love you so very much and hope you enjoy every minute of being a one-year-old!

Neurologist Visit at Shriner's

Today was Nicholas's first appointment with his neurologist, Dr. Barry Russman. Dr. Russman is extremely knowledgeable about SMA and was so friendly and personable. Nicholas, my mom, and I liked him straight away. First off, he told us about a new drug that is being used with SMA patients that is looking very promising for overall strength in children. He said that because Shriner's is a research hospital that he will be able to prescribe it as soon as it becomes available for use. He said that he is hoping it will be available to Nicholas within 6 months to 1 year. (Sorry all you SMA parents, he did not tell me the name of it-I will ask next time we see him in June).

He then asked me about Nicholas physical movement at this time and observed him for awhile and told us that Nicholas seems to be a weak type II, meaning that while he cannot sit-up on his own for an extended period of time, he can sit up for a few seconds, and he is eating well and breathing well on his own at this time. I am so glad we made the decision not to travel to Utah, because Nicholas most likely would not have qualified for that study anyway.

I had a list of questions for him and he answered them all with thoughtfulness and patience. He recommended that we not start Nicholas on Valporic Acid & L Carnitine because after listening to Dr. Kathy Swoboda speak on the data from the Carni-val Type I clinical trial in Utah, the drug showed very little improvement in gross motor function in young children. He also referred us to a pulmonologist at OHSU who will evaluate Nicholas in a sleep study. The sleep study will determine how many apnea episodes Nicholas is having at night while he sleeps, if any at all.

We also saw a speech therapist, a dietitian, and had Nicholas fitted for leg braces and a body brace. The leg braces will help keep his feet straight and steady when he begins to use a stander and the body brace will help his posture and hopefully off-set scoliosis. He did great the entire 4 1/2 hours we were there...even without a morning nap!

We are so grateful to have so many amazing doctors dedicated to helping our family. We honestly feel so lucky to live so close to such a great place that truly cares about children.

The Unofficial First Day of Summer

Today we went out on the Columbia for the first time this year. It was a beautiful 82 degree day without any clouds or wind. Nicholas enjoyed it much more this time than he did last year. His Tumble Form seat was perfect for him to sit in on the Wakesetter because he had the perfect view of daddy doing this....
He kept saying "dada, dada, woo-oh!"

Daddy dipped Nicholas's little toes into the cold water, but only for a second because the river is still very chilly!

Nicholas enjoyed lounging in the sunshine with mommy. Mommy and Nicholas were laying on the back of the boat and were looking at and talking to...
Daddy, Uncle Eric, and Aunt Jami who were standing on the platform.




Our family is looking forward to many more boating trips on the Columbia River this summer!

Yum, yum!

Nicholas is not only feeding himself crackers by hand, but he has also learned...
How to feed himself using a spoon!

And he loves to do it!

He feeds himself 5-10 spoonfuls of food at a time then likes to take a break and let mommy or daddy feed him for awhile. We know he's ready to feed himself again when he starts grabbing for the spoon.

We are so proud of our big boy!

Adapted Ideas

One thing that we have done for Nicholas at bath time is to allow his bath seat to support his head while he moves and plays in the water. We start his bath with him sitting on his bath seat and wash his hair, face, and body. After that, we place the bath seat sideways at the end of the tub and place Nicholas's head on it. That way he has head support and is able to freely move his arms and legs as he chooses. He grabs for toys and moves more than he ever does out of the water. We have started doing water therapy with him twice a day: once in the morning and once in the evening so that he can move those muscles without the pressure of gravity holding him back. We are also seriously considering buying one of those above-ground swimming pools for our backyard this summer so Nicholas can enjoy swimming outside.
After Nicholas's physical therapist, Katie, gave him this Tumble Form Seat, she suggested we buy or make a small table for Nicholas's toys. Yesterday, my mom and I went to Toys R Us to buy Nicholas's birthday gifts (he will be 1 in a week!) and we found this tray. Since the tray wasn't tall enough when placed on the ground, I grabbed several magazines that I had lying around and placed them underneath the tray. The magazines elevated it enough that Nicholas can easily play with his toys. The tray also has compartments on the side that Nicholas enjoys pushing his toys into. He also tries to push the tray off the magazine ledge, but has a difficult time with his limited strength. We think that him even trying to push it off helps with his arm strength!

This is just the start of adapted ideas for us. As Nicholas grows we will be trying to come up with more creative solutions to meet all of his daily needs.

New Chair & Canceled Trip

This blanket was sent to us from the Williams family. It's a special prayer shawl made by Kitty Carr from Sacred Heart Parish in Bellingham. As the shawl was made, the crafter prays for its intended recipient. Thank you Matt, Bev, Lily and Sam! Nicholas loves it!
These are a couple photos of Nicholas in his new Tumble Form seat given to us yesterday by his physical therapist, Katie. A family she used to work with donated it to us after their son with cerebral palsy outgrew it. Nicholas thinks it is comfy and it supports his head really well. The best part is that the chair can move on the base, so we can sit him fully upright or lounge him back when he's tired.

Genuinely happy...Thank you, Katie!


These are a couple photos taken at my birthday dinner at the beginning of this month. We had made reservations at Beni Hana's in Beaverton, but there was a wind/rain storm and the power was out so we drove back toward home and ate a yummy dinner at Stanford's instead.


I had a really nice birthday and first Mother's Day. For my birthday Jeff and my parents bought me the Canon Elph camera I wanted, which was a significant upgrade from my old camera. For Mother's Day my folks bought me a willow tree to be planted in the new flowerbed Jeff is working on for me in our front yard. I will post some pictures of it when it is finished.



In other news, we have decided not to enroll Nicholas in the clinical trial at the University of Utah. We did a significant amount of research before making our decision, and ultimately decided it is not the right thing for our family at this time. The expense of traveling there, not to mention the stress of traveling with an 11-month-old seems too great when we can get the same drugs used in the study from Nicholas's neurologist at Shriner's. Yesterday evening I had a long conversation with a wonderful woman who lives about 45 minutes from us and has a daughter who's three weeks older than Nicholas with SMA. She told me that the care they receive at Shriner's and at other hospitals in the area has been fantastic. She has a lot of good information for me and since her daughter was diagnosed over four months ago, I am hoping she will provide us with as much knowledge as possible as we begin this medical journey with Nicholas. Also, since we have not yet seen Dr. Russman at Shriner's, we think it's best to see him next Monday so we can find out what type of SMA Nicholas has and ask him questions about the two drugs used with SMA patients: Valporic Acid and L Carnitine. I was full of doubt regarding the trip to Salt Lake from the start and now feel a sense of peace and relief that we have decided to stay home and find health care alternatives for Nicholas in the greater Portland area.

Clinical Trial at the University of Utah

Next Tuesday Nicholas, my mom, and I are driving to Salt Lake City, Utah to enroll Nicholas in a clinical trial for SMA.

We are driving because I am terrified of Nicholas flying on an airplane and being exposed to swine flu or any cold for that matter. Kids with SMA tend to have problems with their respiratory systems and are prone to pneumonia which can cause respiratory distress, so it is important to keep him away from that germy plane air which is why we will be making the 12 hour drive from Washington to Utah.

We have appointments on Thursday and Friday to get a baseline on Nicholas' SMA. Here is a bit of information sent to us by Dr. Swoboda's office: The “CARNI-VAL Type I” study for SMA infants aged 2 weeks to 12 months at the time of enrollment. The study requires 3 visits over 6.5 months to carefully and safely monitor the child’s health. Valproic acid, a drug used in this study, appears to be helpful in slowing disease progression in some children.

We feel lucky to be able to participate in this study since the cut-off age is 12 months 29 days. Thank you Jeanette for telling us about this study via Christie...otherwise we would have never been able to enroll Nicholas in time! We feel so blessed to have to many friends and family who genuinely care about Nicholas. So many people have offered suggestions for fundraisers, medical studies, and equiptment needs to help Nicholas in this journey with SMA. We are so lucky to have lots and lots of people who love us so much!

We are hopeful that this could help Nicholas live a longer, healthier life. Please keep us in your prayers as we make this long journey to help our baby boy.

Monkey-ing Around

These are a few of the photos I took of Nicholas and his little monkey for his first birthday invitations...can you guess the theme?

That's right...we will be swinging from the ceiling and eating lots of bananas at our little boy's mod monkey first birthday party later this month!

Novenas for Nicholas

This morning Jeff, Nicholas and I went to 9:00 a.m. mass at Holy Redeemer. Two of my former colleagues greeted us in the vestibule as we were walking into the church. They are both parishioners at Holy Redeemer and wanted to do something for our family in light of Nicholas's recent diagnosis with SMA. They had a beautiful poster board, flyer's, and prayer cards to give to families when they signed up for a week-long novena for Nicholas. A novena is nine days of prayer for a special intention. Families are asked to pray the rosary each of those nine days for our baby boy's health. Families will sign up for one week during the year, with 52 families praying in all. There will be a few days of overlapping prayers since the novena is nine days long and each family signs up for one week. That's a lot of prayers!

Jeff and I are so grateful to Anna, Ria, and Cathy for being so generous with their time to help gain awareness and support for Spinal Muscular Atrophy. Thank you for organizing this wonderful, thoughtful novena for our family.

We are also grateful to every family who signed up to pray a novena for our dear, sweet boy.

God's Gift

A friend of mine emailed me this poem and I wanted to share it with everyone because this is exactly how I believe Nicholas was sent to be with us:

"It's time again for another birth!", said the Angels to the Lord above. "This special child will need much love, his progress may seem very slow, accomplishments he may not show, and he'll require loving care from folks he'll meet, way down there. He may not run or laugh or play, and his thoughts may seem quite far away. In many ways he won't adapt, and he'll be known as Handicapped. So let's be careful where he's sent, we want his life to be content. Please, Lord, find parents who will do a very special job for You, they will not realize right away, the loving role they're asked to play, but with this child sent from above, comes stronger faith and richer love, and soon they'll know the privilege given, in caring for this gift from Heaven. Their precious child, so meek and mild, is Heaven's very SPECIAL CHILD."

First Haircut

This afternoon my longtime hairdresser, Kellie, gave Nicholas his first haircut. Nicholas sat on my lap and it took all of ten minutes for Kellie to cut his hair. We were sad to see some of his little curls being cut off, but there are still quite a few in the back and we are hoping they will be there when his hair starts to let a little longer again. We got to keep a small lock of hair for Nicholas's baby book, too. Our son went from looking like a baby to a big boy in just a matter of minutes!